Courtesy photo
Kerri Kelley fights for her life while she waits for a double-lung transplant due to a rare genetic disorder. Here she is seen with her daughters, eight-year-old twins Ashley and Nicole, and their older sister Kaitlin, 21.

DOVER — Although Kerri Kelley was born with a rare genetic disorder, it wasn't until six years ago her doctor noticed a set of symptoms that led them to determine she would need a double-lung transplant.

“It's not something anyone wants to hear, but on the other hand, I feel fortunate that there is a cure out there,” Kelley said Thursday. “This transplant may not be the ultimate fix, but it gives me hope.”

The disorder is called Alpha 1 Antitrypsin Deficiency and it affects only one in every 2,500 people.

“I started seeing the signs — shortness of breath and fatigue, but we thought it might have just been asthma,” Kelley, 46, of Dover, said.

Shortly after her eight-year-old twin daughters, Ashley and Nicole, were born, Kelley was officially diagnosed with the inherited disorder.

“I soon started seeing myself going downhill, and fast,” she said. “Doctors then told me a double-lung transplant was my last hope.”

A tedious four months of tests and medical appointments later, Kelley was accepted into the Brigham and Women's Hospital's lung transplant program in March. She is currently on the waiting list, along with more than 100 others.

“Although they have a great facility and transplant program, those numbers do not give me great hope,” Kelley said. “I fear the transplant will not come soon enough.”

According to Kelley's family, Brigham and Women's averages 30 transplants a year, but typically has 120 to 150 people on its wait list. They say as her condition worsens, it has become apparent to them a transplant may not become available through this Boston medical center.

Kelley is now attempting to get accepted into the Cleveland Clinic's transplant program, but before she can be accepted, her family must show the financial means to pay out-of-pocket for pre- and post-surgery transport flights, lodging and medicine.

According to Kelley's family, when lungs become available for transplant, Cleveland Clinic requires transplant patients living more than two hours away to use its jet at a cost of $8,000, a cost not covered by insurance. Kelley's family said she will be hospitalized for about six weeks after surgery and four to five post-surgical return visits are required over the next year.

Kelley's medication will run about $1,000 out-of-pocket per month after surgery, and that excludes emergency room deductibles and doctor appointment copays. With all the medical and ongoing child care expenses for the twins, Kelley's family needs financial help. The family said even the smallest donation will help her get closer to being accepted into Cleveland Clinic's Program.